Hello, I'm new here. A couple of years post brain injury, I really wish I'd found the forum sooner!
Having a bit of a rough couple of months.
After me pushing for an answer, the neuropsychiatrist said that I'm unlikely to see improvement now, as the fatigue and so on have gone on too long ( two years). The neuropsychologist says it's not that straightforward.
Has anyone here had improvements after a couple of years?
I've also taken early retirement after two years of sick leave - which feels hard for some reason on top of the obvious financial impact.
Has anyone any experience with applying and getting the ESA benefit?
Has anyone found work that can be fitted into one hour slots in the week ( around fatigue issues)?
With what seems to be poor timing, I'm reducing my low dose antidepressants this week ( with support from the doctor and psychologist) and am worrying about both withdrawal effects, and also whether I'll end up taking them long term, (even though they've been really helpful in quelling the constant headache, and clearing the fog of anxiety and depression I hadn't realised I had ten months down the line).
Has anyone had any experience of coming off antidepressants - or of taking them long term please?
Thanks š
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Painting-girl
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Hi Painting-girl, I can't offer much in the way of advice, but I hope it's OK for me to follow this thread with interest. You sound in a similar situation to me. I am still not the way I used to be and I've just been given notice of dismissal from my job of nearly 34 years because of ill-health. I am about to apply again for Medical Retirement, which was rejected before. I had major brain surgery for a large brain aneurysm in March 2017 and 2 years off work, trying to get as back to normal as I could. Went back to work for nearly a year and had stroke while there in August last year. Been off since that. Done my best to get to my old self, but the issues were knocked back by that stroke. Huge fatigue, cognitive function issues etc. Graunchy back too. Not sure what relates to stroke or medication I'm now on. I have never been on anti-depressants so I don't know about coming off them...
As for PIP, I applied after surgery and was turned down. Didn't have the energy to appeal. Applied again more recently and turned down again. This time I phoned up and asked for reconsideration. No idea what the outcome will be. I applied for ESA when instructed by work back in Feb/March. Turned down for that. I was recently contacted by ESA for an up to date medical report, which confuses me. I sent one to them along with a letter expressing my confusion and asking them to contact me. I've not received a penny.
Not easy, is it? Not being the way we used to be and the struggles of sorting stuff out. All the best to you. There are great people on here so I'm sure good advice and wise words will be coming along soon xx
Hi Lulu, that all sounds really tough to deal with. I agree, it's bad enough dealing with day to day stuff, without extra applications to sort out -a literal headache too...
On the retirement thing I don't know why, after having been on sick leave, it feels so weird to be 'retired' but it does to me. People around me do t really understand why, when to them it looks like I was retired all along. Perhaps because it's unplanned?
I can only speak from my experience of having a TBI ~8.5 years ago. I will say that I still get pretty fatigued now but I have found out how to work around it.
I've read your posts thanks, all makes sense. Your comment about being a man of science rang a bell - my background is mathematics, problem solving is what I do!
I suspect I would have had similar views as you to SSRIs , I'm on an SNRI but the action is the same I assume. I still have many concerns - however I think there's some recent science that bears looking at, particularly where brain injuries are concerned. I came across an article that connected the white matter disruption caused by brain injuries with the white matter disruption seen in depression which indicated that long enough periods on SSRIs actually resolved the disruption in the white matter. So asked my neuropsychiatrist about what the connection was between white matter disruption in depression and brain injury, and he came up with the same explanations as the article, that there's a therapeutic outcome from antidepressants, as well as a short term panacea . Plus that the there isn't a depression centre in the brain as such, so if the white matter is disturbed anywhere by brain injury, it does give rise to depression - least that's what I understood. He's also told me several times that as I've had a brain injury, that statistically I'll be more prone to depression basically forever (depressing thought!). However I'm now trying to reduce the dosage, so shall have a better viewpoint I suspect over the next couple of weeks... My fingers are crossed anyway.
Occasionally I will do some maths just for kicks! Haha, yes, I'm a geek to be fair!
I tend to speak about these things in generalities because I feel that a lot of the brain chemistry is far too complex for humans to even comprehend or be messing around with!
Speaking in general here, I think that one of the major mistakes that humans have made is messing around with naturally occurring things that they have no business messing around with. I'm sure that it sounds ironical to hear that from somebody that needed human intervention to save his life. That's why I always add a caveat that unless it is in 'acute' or 'extreme' circumstances. Anyway, that's my little moan for the afternoon (until I get home and hear 'news') done.
I am 8 years on and have mainly come to terms with issues. I still suffer from fatigue but can pace myself well now.
As to improvements, there is no time limit on improving. As long as you keep living your life to the fullest you can, pushing yourself as much as possible you can still see improvements for the rest of your life. I do although much less frequently.
I could not work either but was only 3 years from retirement and found ESA plugged the gap.
When applying you must remember to always put your worst day down, try not to cover up and ā be braveā. We always want to appear the best we are but in this case you always need to present your worst side. I could walk the required distance etc, but not repeatedly.
I take antidepressants daily and have done for years, i sometimes come off them for a few months but have no qualms resuming their use.
Hi Janet, that's reassuring and helpful, thank you. I'm three years from retirement as well, funnily enough. I've been on sick leave getting 'sick pay' from the firm's insurance company, so have been luckier than most so far I think. The insurance company approach was pretty aggressive, and the onus has been on me to provide justification - I almost can't face going through that again for ESA, but could really use the cash...
It has taken me years to work out the answers to your questions
I eventually concluded work wise I needed to set up on my own so I could choose my hours
I had to fight but I get the what used to be called dla, but when turned down I had to fight and keep appealing.
As for anti depressents, they are just there to bring your seratonen levels to what they should be
To come off them, first do other things to produce it naturally. Have you tried mindfulness or meditation? Go easy on yourself and recognise and praise yourself when things go well.
Try and reduce stress as much as possible.
You have been through a lot and now need to step back and concentrate on your wellbeing.
Thanks Jaec, that's really good advice, Meditation and mindfulness really work fir me too, whether it's to stop a mental overload feeling, or help with fatigue ( or just feeling better in myself ) . But I hadnt thought about it in terms of helping with withdrawal - thats a good tip, thanks š
Hi, U have never stopped looking for ways to help my husband who suffered a TBI 21 months ago. I have found a lot of help on here. Please get a book called Ghost in my Brain by Clark Elliott, it's brilliant. He visited 2 different specialists, one gave him these special glasses, the other a ton of puzzles to do. My husband does the latter, and we're still looking into glasses. Also a book called How to Feed a Brain Calvin Balaster, which recommends certain foods and vitamins. This was suggested to me by Janet Glover, a neuro therapist and wife if John Glover, an optometrist near Stockport. I do think my husband is improving - would he have anyway, without all these things? I don't know, but trying has given me purpose at least! We'll never know I suppose, but I do think they are worth a try. X
Thanks - and I've had some positive info today too, had an appointment with the neuropsychologist, and she thinks that if I haven't had a bad reaction to cutting down the anti depressant ( by half) by today, that I probably won't have bad withdrawal effects š xx
Hello painting girl. What you have written resonates with me big time. I had a brain tumour removed on Valentineās Day 2013. I have another which is behaving atm. Whilst I have made huge progress, having learned to walk again, couldnāt talk for a while (a positive outcome of this was I couldnāt nag hubby š¤£) etc. I still very much experience confusion, difficulty finding words, dexterity and coordination.
My fatigue has hardly changed. Despite resting, pacing etc. Neurosurgeon told me after couple of years, that itās likely there wonāt be any further progress. Which is VERY hard to bear, so much so that I get to very dark places sometimes. As much as I kick against it, itās all consuming. Some days I can barely get dressed, itās so bad. Everyone is different, and I sincerely hope that things to improve for you. Whilst we are all so grateful to still be here, life as this new person, is hard to accept.
Regarding anti depressants. I have been offered them in the past, but refused. Iāve not got on well with several types I have tried, so donāt want to have to fight those side effects as well. Donāt have the energy. Plus I take so much medication now, Iām also epileptic due to the tumour that was removed. So I canāt offer any comments on that part of your post.
I eventually was medically retired from the police, after two years of having them on my back. Stress that weighed me down and that I didnāt need. I did go back on a few occasions, as they found work to accommodate my abilities, HR did their best. And I did really try. I wanted to be useful. None of those options worked. In fact a very senior officer wanted me sacked, I was putting it all on...textbook cases for recovery were weeks, not years š”. Union were no support whatsoever, on their side and not mine.
Eventually a medical panel supported the evidence I provided and I got medical retirement. A huge weight was gone.
Regards the paperwork, after many weeks in hospital I got discharged to the Rehab Unit. And I will forever be endebted to them. They helped me fill in the PIP and ESA forms. Itās a minefield, isnāt it? Basically you have to base all your answers on your worst days and experiences. Unfortunately if you are positive in your replies, it works against you. Be honest about how sh*t life can be, how you struggle with things.
I have always been brought up, to just get on with things and just deal with it, but to and outsider if you canāt show how you struggle, TBF they wonāt award as it doesnāt sound like you need financial support. Iām started to flag now, but I hope you understand what Iām getting at.
I wish you all the luck in the world, as there isnāt anything visible, itās hard to prove.
I have heard how good the CAB are at assisting with all the beauracey, so might be worth a try,
Hello Bellemare, thank you so much for sharing all this with me, I really appreciate it, because even posting here is an effort I think. Your post really resonated with me too - it's tough stuff to deal with, isn't it? I think as human beings we expect things to change and improve automatically, so being told there is a limit is particularly difficult to deal with. At least we have this forum or Headway for those dark moments now - wish I'd found it sooner...
The insurance company paying ny sick pay were very aggressive in terms of querying that anything was wrong, but luckily my boss was supportive from really early on because he had known someone else with a brain injury, so it reduced some of the pressure from the company on me I think.
Thank you for your advice on the ESA, I wouldn't have thought of that without your reply and some of the others.
Hi, it interesting you refer to yourself as the new you. I tend to use mark I, and mark ll. My name isn't mark.
My recovery arrested at around three months post stroke, no rhyme or reason, it just stopped.
I was early retired from work. When I contacted the DWP, they read through a list of benefits, asking if I wanted to claim, I said yes to anything, only to be told I couldn't, ESA was the only one I could. This one is (ESA) important, as it covers your state pension contributions. If like me, you get a pension, you get contribution based ESA, and as your pension increases the ESA reduces, but even if you get to the point of recieving zero, it is important that you stay registered for the benefit, again to cover your state pension contributions.
I became extremely depressed, although I didn't recognise it, old colleagues had said that I sounded depressed, and these were people that knew what they were talking about, as I would have seen if I had looked in a mirror.
It took me to hit crisis before I sort help, the GP put me on mild antidepressants, and the Neuro Rehab team stepped up with neuropsychology, neuro-psychiatric, OT, and physio.
The trick cyclist (psychiatrist) added in an SSRI antidepressant, and said that I would need this for life as my brain was incapable of managing serotonin. I remained in crisis and the medication was increased until I reached a therapeutic dose.
I had to move because I couldn't afford to maintain my house where I was living. The new GP thought I was on too much medication, so tried to reduce it with devastating effects. I was referred back to neuro-psychiatry. On top of the meds I was on they added a SNRI. This was six years post stroke, and slowly the mist lifted. I now feel nearer to my old self mentally.
I have found that times I have messed up ordering meds or when there has been a supply problem, that withdrawal is not pleasant.
You may find it different if you have recovered enough to not required medication.
Something else to think about, and it is where the correct language matters, is under the Housing Act, if you are classed as severely mentally impaired (I don't like the words, but they are only words), you will qualify for either a 25% reduction if you live with a partner, or a full exemption from paying council tax. You can get a form from the council that your GP completes, either under the Housing Act you are or you are not. Something to consider, this is applied from the date you had your injury even if you moved.
Hope this is of help, please feel free to ask more.
Hi Pair of boots, I like the mark l and mark ll idea, and am definitely going to call the psychiatrist a trick cyclist from now on - that made me smile š..
That aside, this is all really useful stuff - so many thanks for your reply.
I had no idea thar I was depressed either until the fog lifted once I was on the SNRI which has really puzzled me. I think I would find it hard to accept that I do need an antidepressant all the time, but after reading about people's experience here, I think I would rather take them if it makes a significant impact on my life compared to not be using them. Ill go cautiously - the trick cyclist says that he won't advise reducing them again until after Christmas - so it's going to be very gradual.
I can see that my spelling / typing is starting to go crazy, so will stop here, but thank you so much for your helpful reply.
He/she has a 4' vivarium. I'm not sure any more what sex it is, well I do at the moment, but he was named Lizzie, he was sexed to be male, but recently he, who is now she layed about 30 eggs. I had to look it up. But apparently they can completely change sex. Isn't nature great š
Apparently the sex change dragons are meant to be really good mummies. Not Lizzie, eggs all over the place, he/she did start to scrape out a nest, I thought it was odd, but when it come to lay, the so and so layed them everywhere, even halfway up a log, that didn't work. Considering Lizzie lives on his/her own, there was no chance of the eggs being fertilised.
Hi im 2 years post ruptured aneurysm and had big improvement cognitively after cranioplasty last year. Im on PIP, my partner helped but we've split up now. They wanted me to retire after 2yrs absence but i resisted as felt like a lottery, back at work now and great to be independent, so pleased I didn't retire. Im on antidepressants too which really helped but will wait a bit longer before coming off and i feel more secure at work and socially
Sorry to hear you're having a rough couple of months I'm year 7 with my TBI and my neuropsych suggests a break every 45 min when doing anything requiring concentration or focus, vitamin d-lux spray two sprays a day helped decrease my fatigue a lot in year 2, also high complex vitamin B vitamins. Have you ever had blood work done to see if your endocrine system including thyroid is functioning well? TBI often can cause endocrine system changes and imbalances as well as brain and body inflammation which causes fatigue too. Hope that helps!
Hi sopranoA, thank you for your reply, that's great - all useful suggestions. You're right, low levels of vitamin D can produce quite bad fatigue even without a brain injury - that happened to me a few years before the brain injury, and then my D levels dropped again last year.
Actually I'm curious about the endocrine issue, as that seems to be the only thing that's not been covered by my neurologist as far as I can see - and I haven't seen it talked about much here.
Oh, I forgot to mention DHA is really good which is in Omega supplements! And for vitamin D, I love the D-lux spray by Better You.
I started to hear about the endocrine issues year 2 after my accident as my GP was testing bloods to try to help my fatigue. My cortisol was really high and prolactin high. Neither should have been. The more I've researched, the more I see the effects of inflammation on the body from TBI, thyroid issues, temperature dysregulation which I still have and my friend with a TBI had kidney issues bc of her TBI. Also changes to the immune system. There's a whole neuroendocrinology field now that addresses all of it. I'm still shocked that as far as we have come medically, we still know so little about the brain and how to treat TBIs. And for women, effects on our hormones can happen too. I found this article interesting: psychologytoday.com/us/blog...
Thanks for this, I do keep close tabs in my vitamin D status - it got horribly low when I was doing a long commute - and the loading doses I was prescribed at the time were quite transformative - I had all my ( equally nocturnal) commuter friends taking the stuff š¤£ Omega stuff is important too, isn't it.
I think I'm going to push for an endocrine check - it's the only thing, apart from glasses, that the neurologist hasn't referred me for I think - but perhaps my bloods were ok? And bizarrely I've had hot flushes start up since the concussion, but the neuropsychiatrist thinks it's just a stress response. I'm not sure how much neurologists collaborate with endocrinologists though?
You're quite right, there seems to be a bizzare lack of knowledge out in general practice on brain injury (almost like a desert) and even my first neurologist was prescribing drugs like beta blockers for my headaches that the neuropsychiatrist said that they didn't prescribe for post traumatic migraine anymore - neurologist number 2 rather interestingly said that post traumatic migraine was totally different from regular migraine.
As far as I can see there was a long period where post concussion was regarded by a good chunk of neurologists as either all in the mind, or malingering, and the other camp has only relatively recently gained ground with the better scanning equipment and research with fmri and so on. What do you think?
Have you tried a B12 injection? I know it might hard to get in pandemic times but definitely notice the brain benefits of high complex B vitamins. For Omegas, I take the ones with the highest DHA as that is the brain support
Sorry to hear about your hot flashes. I had irregular periods for a long time after my TBI and immune system is rubbish now as well as feeling cold while other people are hot! Sadly, most neuros don't talk with most endos! But the research on neuroendocrine is out there. Both stress response and inflammation in the brain and body seem to happen from TBI. Can't hurt to see an endo to check thyroid and other bloods as they may be able to help.
You're right that it's like a desert with TBI help once a bleed or swelling is ruled out. Post-traumatic and TBI migraine totally different from a normal migraine. One of my friends with a tbi found that beta bocker injections really helped. It's challenging as no two brain injuries or brains are the same.
My second neuro thought many of my TBI symptoms were caused by chronic pain and/or PTSD but there is so much overlap it's often difficult to tease out all the factors. It's frustrating that neuros disagree on things and many don't keep up with the research. I'm excited that stem cell research and even plasma treatments in the future might help us TBI sufferers! Have to say too that if any doctors or specialists went through what we do every day, they would never ever use the word malingering!!
In an ideal world, fmri's would be standard for brain injury at intervals over the course of recovery. It's so upsetting that there is still this notion that if something doesn't show on a CT or MRI, there is no damage. It's absurd, wrong and actually flies in the face of the science that shows the connections are damaged and white matter is affected, along with all of the obvious symptoms people experience. There is nothing 'mild' about a mild brain injury.
I've had many convos about all these things with the wonderful Dr. James Zender whilst asking him questions as he is a certified brain injury specialist and trauma psychologist. He's been kind to share his knowledge He's having a facebook q&a next week if you want to ask him anything? And I can ask him questions for you and of course will keep passing on anything I've discovered that might help!
You are not alone and us TBI'ers can really help and support each other. I do as much as I can to share all I've experienced and learned to try to help anyone. Wish I had known what I know now when my accident first happened! What a journey its's been!
Hi sopranoA - thanks for your message, I was writing you a reply, and my phone died - so it got lost in the ether - will try again tomorrow when I don't have a headache!
That sounds like like a progress Hope you continue to feel better! I have found that anti-inflammatory diet , probiotics and melatonin in .5-1mg dose has helped with some of my symptoms if that's helpful?
It is! Two whole weeks now on the lower dose - and feel ok actually, positively bouncy in fact. Had been quite concerned about the process because Duloxetine has a short half life, and it did knock out my constant headaches quite quickly originally - though I was having a lot of physio on my neck at the same time, so it's difficult to split out what worked when.
Just spending too much time on this site concentrating at the moment š and growing new headaches...
Actually joking apart, its been a huge relief to read the posts here -and probably worth several months of psychology appointments in terms of acceptance (!) There's a great commonality of symptoms, isn't there? It doesn't all seem quite so bizarre now.
Ok haven't tried any of those ideas, except that I don't eat processed food, and just cook from scratch, so assume that my diet ticks those boxes partially at least. Which probiotics do you take? What constitutes an anti-inflammatory diet - low meat?
I asked the psychiatrist about melatonin, because it's supposed to be better than amitryptline for insomnia, but he said it was the 'wrong short of insomnia'. Might revisit that because my ability to not fall asleep has been fairly spectacular at times lately, and I want to continue to steer clear of amitriptyline.
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I'm year 7 with my TBI and my neuropsych suggests a break every 45 min when doing anything requiring concentration or focus, vitamin d-lux spray two sprays a day helped decrease my fatigue a lot in year 2, also high complex vitamin B vitamins. Have you ever had blood work done to see if your endocrine system including thyroid is functioning well? TBI often can cause endocrine system changes and imbalances as well as brain and body inflammation which causes fatigue too. Hope that helps!
Hi, from a new member
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